Genetic-testing technology is progressing rapidly. The rules need to keep up.
By Editorial Board,
The Washington Post
| 09. 04. 2018
THE SEARCH for the so-called Golden State Killer — who allegedly raped dozens of women and killed at least 12 people in the 1970s and 1980s — had hit a dead end when investigators decided to test DNA evidence from a crime scene against genetic data on GEDmatch, a website of volunteered samples. Eventually, this technique helped investigators close one of the most notorious cold cases in recent history — but it also raised important questions about the privacy rights of customers. How and when should genetic testing companies share data with third parties such as researchers, websites or law enforcement officials? And do companies have an obligation to inform users that their information has been shared?
These concerns were heard in the genetic-testing industry. A number of popular companies, including Ancestry and 23andMe, recently committed to a new set of best practices governing how and when they would collect, use and share customers’ DNA. Among these guidelines are promises that the firms would obtain “separate express consent” from users before sharing their genetic information, use robust information security and...
Related Articles
Flag of South Africa; design by Frederick Brownell,
image by WikimediaCommons users.
Public domain, via Wikimedia Commons
What is the legal status of heritable human genome editing (HHGE)? In 2020, a comprehensive policy analysis by Baylis, Darnovsky, Hasson, and Krahn documented that more than 70 countries and an international treaty prohibit it, and that no country explicitly permits it. Policies in some countries were non-existent, ambiguous, or subject to possible amendment, but the general rule remained, even after one...
By Tamsin Metelerkamp, Daily Maverick | 11.18.2024
The National Health Research Ethics Council (NHREC) has confirmed that heritable human genome editing (HHGE) remains illegal in South Africa, after changes in the latest version of the South African Ethics in Health Research Guidelines sparked concern among researchers that...
By World Health Organization, World Health Organization | 11.20.2024
By Colette Shade, The New Republic | 11.14.2024
Photo "Elon Musk" by Daniel Oberhaus on Flickr (CC BY-NC-SA 2.0)
Would Donald Trump have won reelection if not for the backing of the world’s richest man? We’ll never know. But that man, Elon Musk, gave Trump more than $130...